Background: Adolescent and young adult (AYA) cancer survivors are an age-defined population (15-39 years old), with studies reporting nearly 90,000 newly diagnosed AYA patients annually in the United States and 633,000 survivors of AYA cancer in 2020. Despite an overall improved five-year survival rate among AYA cancer survivors in the past two decades, these improvements have not transferred equitably to underrepresented—specifically Black, Indigenous, and People of Color (BIPOC) and sexual and gender minorities (SGM)—AYA cancer survivors.
Proposed Solution to the Problem: The project team will utilize a transdisciplinary approach to enhance a national research infrastructure through the AYA CAncer RESearch (AYA CARES) program at the University of Michigan. The team will engage in a series of stakeholder-centered activities for the purposes of conceptualizing, developing, and disseminating patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) studies that capitalize on the collaborative efforts, experiences, and brainpower of (embodied) researchers, clinicians, AYA cancer survivors, caregivers, program administrators, and other stakeholders.
Objectives: The team’s objective is to cultivate its nascent research infrastructure and build capacity for conducting PCOR/CER that is inclusive and equitable in terms of enhancing opportunities for participation by AYA cancer survivors who identify as BIPOC and/or SGM.
Activities: The project will identify strategies for recruiting, engaging, and retaining underrepresented AYA cancer survivors in PCOR/CER through a needs assessment. The project will then develop and implement mechanisms for dissemination through a broad network of stakeholders who are invested in care, research, and advocacy for AYAs affected by cancer, including a symposium bringing stakeholders together to discuss the findings.
Projected Outcomes and Outputs:
- Short-term outcomes during the project period include a white paper summarizing stakeholder-suggested strategies and practices to engage BIPOC and SGM AYA cancer survivors in PCOR/CER.
- Medium-term outcomes (zero-two years post-project period) include continued connections and collaborations between all participating academic and community partners with AYA CaRES, focusing on efforts engaging BIPOC and SGM AYAs.
- Long-term outcomes (three or more years post-project period) include the continued growth of AYA CaRES at the University of Michigan by establishing a national consortium of AYA cancer research.
Patient and Stakeholder Engagement Plan: Underrepresented AYAs with cancer will serve on a project advisory board to guide all aspects of the project. The project team will also involve academic and community partners in the project recruitment and symposium development.
Project Collaborators: The project team at the University of Michigan Health will collaborate with four other geographically representative cancer centers with AYA programs (including the University of Chicago, MD Anderson Cancer Center, Columbia University, and the University of Southern California) and six community partners serving AYAs with cancer (including Escape, Elephants and Tea, Stupid Cancer, GRYT Health, Teen Cancer America, and The Cancer Patient). Each institution and organization will bring their unique strengths in supporting AYAs diagnosed with cancer.